We visited Dr. Nice Guy tonight, Elijah's rehabilitation medicine doctor (also known as a physiatrist). The doc was pleased to see that Elijah continues to improve in his motor skills.
We're looking into getting new hand splints for Elijah. He has outgrown his old ones and since he still keeps his thumbs abducted, the doc thinks new braces might help him as he's now exploring his world more. We asked again about Surestep and Dr. Nice Guy doesn't think Elijah needs any foot orthotics. "His feet look better than my six-year-old's feet!" he said.
We had read in Elijah's medical records that Elijah has spastic quadriplegia cerebral palsy (spastic meaning the muscles are tight and quadriplegia meaning all four limbs are affected) and I wanted to know what Dr. Nice Guy thought. So, before we left I asked the doc the million dollar question: "What type of cerebral palsy does Elijah have?"
The doc chuckled. "That's a good question." He went on to describe the different types of cerebral palsy and how depending on which doctor we talked to, we'd probably get a different answer from each one. He mentioned that he rarely sees kids like Elijah –usually if they're walking as well as he is, their hands would be looser too. The doc thinks that Elijah's motor skills will continue to develop as he gets older, which is obviously great news.
He talked to us about a newer way of classifying cerebral palsy, called the Gross Motor Function Classification System (which we had heard of before). He mentioned that any doctor we talked to would agree that Elijah is a level one, which is the mildest form of cerebral palsy in that classification system. Dr. Nice Guy didn't want to commit to a specific CP type, so I guess Elijah is a level one and we'll leave it at that.
This is good news, so why am I not happy?
I have to say, I left the appointment with such mixed emotions. On one hand, the doc seemed to think that Elijah's motor skills will continue to develop so much so that at some point his cerebral palsy might not even be apparent (!!). Amazing, right? Awesome! Physically, he really is doing so, so well.
But (and isn't there always a but?), he foresees Elijah's disabilities as being more cognitive than physical. I suppose we've known this for awhile now, but it's not an easy pill to swallow. I'd be lying if I said that I'm okay with this. I'm not. What I wouldn't give to be able to have a conversation with my child, even if that meant Elijah told me how much he disliked me. Is it horrible for me to say that I'd trade in some physical stuff for ABC's and 123's? Does it make me a horrible parent to admit that? I've known for almost two years that anything Elijah was able to do would be a miracle. He is a miracle - no matter what. I'm mad at myself for even feeling sad about it.
The future is scary sometimes. I wonder what we'll be able to teach Elijah and what he'll be able to understand. I get weary thinking of school and how we'll probably have to fight for him to get him the things he needs. I worry about his seemingly fearless attitude and how he doesn't seem to grasp personal safety. And, yet, I feel incredibly stupid even saying these things. How can I be sad when we weren't sure he'd even be alive? How can I be sad when he's running around our backyard? Have I forgotten how far he has come? Have I forgotten the parents who would probably kill to be in our shoes?
It's at these times that I step back and remember what's important. What do I want for my child? I want him to be happy. And he is. He loves his life. I want him to know God. And I'll do my best to teach him. By no means am I giving up on him. Nothing is new here. Elijah acquired a significant brain injury at birth. That injury, for whatever reason, affected him more cognitively than it did physically. He has come a long way in the past two years. Who knows what he'll be doing in two more. Perhaps once he conquers all the physical stuff he'll be able to conquer the world. I'm a firm believer that with God, anything is possible and that prayers work. That, however, doesn't mean it isn't hard sometimes.